Timothy Ray Brown, the man known as the Berlin Patient who was the first person to be cured of HIV, and who was widely respected in the global but close-knit AIDS community, died Tuesday at his home in Palm Springs.
Brown moved to San Francisco not long after revealing that he was the “Berlin Patient,” the man whose leukemia was treated with a bone marrow transplant that also eliminated his HIV infection. He stopped taking HIV medications and had shown no sign of the virus for more than 12 years.
But the leukemia returned earlier this year, according to his longtime partner. Brown died after a five-month illness. He was 54.
Those who knew him said he was a humble man who wasn’t eager to embrace the strange fame that came from his experience with HIV, but who recognized that he could play an important role in drawing attention to the global battle to end AIDS.
The bone marrow transplant that cured Brown was incredibly risky and not practical for widespread application. But it provided the first evidence that a cure was possible for a disease that was devastatingly stubborn.
“He changed the entire field of HIV research. He made the impossible possible. He made it possible to use the C-word: cure,” said Dr. Warner Greene, an HIV scientist at the Gladstone Institutes in San Francisco. “It really is difficult to overstate what he represented to the field and how transformative it was.”
Brown was raised in Seattle and in 1993 he moved to Berlin, where he worked as a translator. He became infected with HIV in 1995, just as drugs to fight the virus were developed and people began to live with the disease instead of facing the imminent death sentence of AIDS.
But the drugs then, and still now, can’t defeat the virus, so Brown remained HIV-positive. In 2007, he was diagnosed with leukemia, and eventually required treatment with a bone marrow transplant. His doctor thought the procedure, which involves wiping out a patient’s immune system and replacing it with donor stem cells, could take care of the HIV infection, too.
The premise is to use stem cells that come from donors with a rare genetic mutation that makes them naturally resistant to HIV infection. The recipient’s immune system therefore is replaced with HIV-resistant donor cells, effectively stopping the virus’ ability to spread in the body.
Since Brown, another man has been cured of HIV with a bone marrow transplant. The so-called London Patient was announced at an AIDS conference in Seattle last year.
Dr. Steven Deeks, a longtime HIV cure researcher at UCSF, met Brown shortly after he’d moved to San Francisco in 2011, about a year after he’d revealed that he was the Berlin Patient. Brown showed up at Deeks’ clinic, “and he was just so humble, he wasn’t running around being Mr. Cure,” Deeks said.
Over the next few years, Deeks and dozens of scientists around the world asked Brown to participate in countless studies to understand how he was able to fend off the virus, and Brown was always eager to help, offering his time but also his body — blood and tissue samples, over and over again.
“I said, ‘The world is dying to know what happened. We want some of your blood,’” Deeks said, recalling one of their first visits. “And he said, sure. And then I said, ‘Can we take a piece of your gut? Your lymph node? Can we get a spinal tap? And he said, yes, yes, yes. He gave up big pieces of his body for research, and he was doing it for pure altruism.”
“He was genuinely a rock star in the HIV cure world,” Deeks said.
Brown similarly volunteered his time in the laboratory of Dr. Jay Levy, a UCSF scientist who has been studying so-called elite controllers — people like Brown’s bone marrow donor who are able to fend off HIV infection without drugs — since the mid-1980s. Levy said Brown showed up in his lab one day and asked if he could be of use.
“Timothy was adored by my research group. He was like a member of the lab,” Levy said. He said Brown was sometimes troubled by people who didn’t believe he’d been cured — who argued that he must still carry some of the virus in him.
“But, in the end, he was cured,” Levy said. “No one can take away from the fact that he gave great hope to the field.”
Brown was a bit of a local celebrity in his time in San Francisco, Levy said. During one visit in Levy’s lab, Brown told him that he’d been to a bar with friends, and the entire crowd had raised their glasses to toast him. Deeks recalled Brown regularly being asked to pose for photographs at AIDS meetings around the world.
In a Chronicle interview in 2011, Brown said he’d been invited to attend an AIDS activist panel in San Francisco shortly after naming himself as the Berlin Patient. He was there just to listen, but an organizer who knew who he was asked if Brown would mind being introduced. Brown was applauded when he stood up, and he said he turned bright red in embarrassment.
“Afterward, all these people kept coming up to me and shaking my hand, and wanting to have their picture taken with me,” Brown said. “People tell me I give them hope. That if this happened to me, it could maybe happen to everyone.”
Gregg Cassin, a longtime HIV survivor who leads programs for other survivors through the Shanti Project in San Francisco, said Brown’s cure was profoundly meaningful to the community of people living with HIV and AIDS.
“It turned HIV from being absolutely invincible, this bogeyman, this monster that can never be conquered. Here was one example that HIV can be conquered, that we may actually find a cure one day,” Cassin said. “It was helpful to have that little shining beacon.”
Five years ago, Brown published a personal essay about his experience, and his hope that one day he wouldn’t stand so alone with his cure. This was before the London Patient, and those who knew Brown said he was troubled to remain the only person cured.
That thinking was a large part of why he decided to reveal his name and his face to the public.
“I was not ready for the publicity,” Brown wrote. But “I did not want to be the only person in the world cured of HIV. I wanted other HIV-positive patients to join my club. I want to dedicate my life to supporting research to search for a cure or cures for HIV!”
Brown is survived by his partner, Tim Hoeffgen of Palm Springs, and his mother.
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